CF and the Clemens Family

$10,530 of $20,000 goal

Raised by 113 people in 11 months
Created July 27, 2017

Joe and Kate Clemens live with their family in the Dallas area of Texas.  They have four wonderful children.  Lauren is 25, employed and lives on her own.  Megan is 24, employed and living at home.  Natalie is 20 and Owen is 18, both were born with Cystic Fibrosis and live at home.  More information about Cystic Fibrosis (CF) is located below and on the website for the Cystic Fibrosis Foundation, www.cff.org.

The specialized care and treatment required to treat and manage children on a daily basis with CF has dictated the lives of the entire Clemens family for 20 years. Joe and Kate have provided the necessary care with dedicated determination, love and faith.  In 2008 the family made the move to Texas from Michigan for Joe’s employment and the vitally important necessary comprehensive healthcare insurance.  The family’s overall goal has always been to have Natalie and Owen lead a normal healthy happy life in spite of their debilitating conditions.

The Clemens family has succeeded in meeting many of their goals since CF arrived with Natalie.  However, maintaining CF children in good health has proven to be a most difficult and often impossible task.  This struggle for good health has come, and continues, at an enormous cost to the entire family economically, emotionally and physically.

Currently, the never-ending and increasing medical expenses are creating a tremendous financial stress on the family.  Within the normal budgeting for a family of six, the family also has financial obligations for hospital stays, doctor visits, prescription medications, medical supplies, specialized dietary requirements as well as lodging and transportations expenses incurred for medical needs.

CF patients are destined to a life of extensive and often continuous health complications and a shortened lifespan.  As Natalie and Owen have grown into young adults the health and economic setbacks are unfortunately occurring with increased frequency, regularity and intensity.  Specifically Natalie’s health has been declining significantly in the past 12 months.  Her all-important lung function is now chronically low with readings under 40%.  This level now requires her to use supplemental oxygen 24/7.   Natalie is also requiring more frequent hospital admissions with extended stays.

 Natalie’s also has been diagnosed with the following:

       Chronic Kidney Disease
       Immune System Deficiency
       Cepacia Bacterial Infections
       Sinus disorders
       Hormonal Imbalance
       Nausea and GI Complications
       Bladder Spasms
      Ankylosing Spondylitis and Arthritic Pain
       Migraine Headaches

 The daily regimen for Natalie and Owen:

      Taking pancreatic enzymes before consuming any foods
       Taking upwards of 25 oral medications  
       Breathing therapies (multiple times a day)
       Percussion therapy (twice a day)

 Previously Natalie was admitted into a children’s hospital which had a CF specialty unit.   Now due to her age, Natalie must go to a general hospital without the specialty unit.  Also, because of the cepacia bacteria she grows in her lungs (only a small percentage of CF patients grow this bacteria), she cannot be on the same floor as other CF patients.

Natalie has grown into an amazing young woman despite all of her health issues. She enjoys photography, music, make-up, fashion and her friends.  Natalie’s maturity, strength and resolve is absolutely amazing.  She has a delightful sense of humor.  Self-pity is not part of her demeanor, patience and understanding prevail even on the longest and most difficult of days.  Natalie inspires all who know her. 

Owen also deals with the daily challenges of having CF.  His case is not as severe as his sister’s, but Owen has had increased number of hospital stays in the last year too.  He is aware of Natalie’s declining health and the reality of it.  This causes him great heartache and fear.

Natalie and Owen have held part time jobs which was a huge boost to them socially and psychologically.  However, their health didn’t allow either to continue.  Social Security Disability Benefits were denied for Natalie.  This unbelievable response is now being handled by a volunteer lawyer for appeal.  Maneuvering through the government bureaucracy will, however, take time.  The family is hoping to apply for Social Security Disability Benefits for Owen as well.

CF is a life-long disease, there are no breaks from it, there is no remission and unfortunately to date, there is no cure.

Ideally, the Clemens believe they should be able to manage their struggles on their own.  Even though they have been blessed with a supportive and generous extended family and group of friends they are reluctant to seek help from family or beyond.  They are grateful that you have taken the time to read about them.

We are hoping to ease their financial burden with this Go Fund Me Campaign. This will allow an extraordinary family the opportunity to fully address medical concerns, their own well-being and enjoy more of whatever the future has in store for them.

*Cystic Fibrosis (CF) is a progressive, genetic disease that affects the lungs, pancreas, liver, kidneys and intestines.  It causes persistent lung infections and limits the ability to breathe over time.  People with CF spend hours each day on their daily care; which can include doing  breathing treatments (2 or 3 times daily), consuming inhaled and oral medications, taking enzyme supplements, as well as doing any additional treatments and therapies as prescribed. There are only about 30,000 people in the US who have CF.  There is no known cure for Cystic Fibrosis.

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“Just because I have Cystic Fibrosis doesn’t mean I’m not happy,” Natalie Clemens declared in this Public Service Announcement to educate people about the disease. Natalie was happy. She was blessed with wisdom and maturity beyond her years, evident even five years ago when this video was made.

She died October 1st. She would have been 21 years old in November. There were 100 hospital stays in her lifetime. Natalie had every reason to have a pity party, but she didn't.

Natalie accepted her disease and made the most of life. She certainly didn’t sit around. She even went skydiving! In fact, you wouldn’t know Natalie was sick if you were to meet her for the first time. Natalie was beautiful -- with dark hair, brown eyes and lots of Clemens freckles. And you would immediately like her.

Natalie was upbeat and funny. She had quick comebacks and a killer sense of humor. Her laugh was infectious! Even in ICU before she died Natalie was still making her family laugh. We miss you, Natalie! There will be no more hospital stays.
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$10,530 of $20,000 goal

Raised by 113 people in 11 months
Created July 27, 2017
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